A perspective from Barbara Davey: Dementia our Shared Journey

Posted on 24th April 2019

My name is Barbara Davey, and the Local Meeting (LM) I belong to up in Scotland would probably be described as medium sized – usually about 30 Friends on a Sunday, considerably fewer at our shorter midweek lunchtime meetings. For many years I served locally as an elder, and I’m currently approaching the end of my second term of service as a member of the oversight group.

Looking back, there have been quite a few Friends living with dementia in our meeting. I have learnt how different each Friend’s journey is, and how unexpected. There has been nothing predictable or set in stone about any of them. I think it is helpful to remember this, and to be open to how a diagnosis might develop, also to remain open about the response we find ourselves able to offer. Whether or not we have a named role, a perceived expertise, each of us can express loving friendship in community.

At the moment we have one Friend, Mary, living wth dementia. Her family are not Quakers but they ensure she is still attends meeting, her sons often driving considerable distances themselves to bring her, and we’ve talked to them about enabling Mary to attend even when they can’t undertake this. Mary was at meeting just this Sunday past, and after meeting I found another older Friend in tears. “I hate this dementia”, she cried, “I hate what it is doing to Mary”. They went back many years, working together in the early days of Women’s Aid, and the Friend was distraught to hear Mary describing how she felt so lost that morning, so disembodied, so disempowered. There was anger in the Friend’s voice, sorrow and despair.

When I began preparing for this talk, I realized I was saying to myself the phrase Friends suffering with dementia. I quickly weaned myself away from that – we prefer to say Friends living with dementia don’t we. Nevertheless, I do think it is important to acknowledge the suffering, and the sadness, the loss. But tears do not always blind (Qf&p 24.58) and what can being part of a worshiping community offer as we face the big questions of faith that a diagnosis of dementia brings us up against? Of course I have not found easy answers, but perhaps there’s a way of living in worship through the experience, and it’s in that context that I’d like to share with you something of the story of another Friend in our meeting. Her name is Joyce.

I first got to know Joyce when we were both elders together. That was often a challenging time for me, as a young and new elder – Joyce had a way of getting to the heart of things that could be quite devastating in its honesty. Joyce lived on her own and we continued to stay in touch, regularly spending time together – simple things like a walk with her dog, or talking over a cup of tea. Slowly it became apparent that all was not well. Joyce’s bungalow became increasingly chaotic, she stopped attending meeting and declined offers of a meeting for worship in her own home, she became prone to delusions and finally a diagnosis of dementia was made. I was actually with Joyce at that doctor’s meeting, as she’d asked me to accompany her. We came out and sat together in her favourite local tearoom. It was bleak. For the first time I heard Joyce describing herself as dementing. That admission, that facing the reality, which took great courage, somehow enabled our talk together to turn to love.

If being part of a worshipping community means anything, it must surely mean we are part of a loving community and there was something in our conversation that morning about receiving the truth in the love of it (Qf&p 19.07) that stood me in good stead during the times that lay ahead.

Joyce eventually moved into a care home nearby, and most Friends who’d known her for much longer than I had gradually stopped visiting her. Her decline shocked them, touched a raw nerve: perhaps they didn’t know how to relate to her any more. I found that seeming abandonment hard. I sought to understand more deeply the fears that might lay behind it and tried not to have expectations, remembering rather to live up to the light thou hast, trusting more will be granted thee (Qf&p 26.04). I trusted that Friends were upholding Joyce, and me, prayerfully. That is an important part of being in community too – we need not feel guilty about what we cannot do. Be realistic, be truthful, turn to what is possible. Holding in the Light is something to be treasured. And I tried to ensure Joyce was not forgotten at meeting – mentioning news of her every so often, or inviting Friends to sign a card for her. With her agreement, we even held small and very short meetings for worship in the care home for a while – a Friend joining me, Qf&p on the table.

I continued to visit Joyce regularly, even if I had only a few minutes to spare, and this enabled us to maintain our friendship, as the nature of it began to change. Regular visiting made it easier for me to accept how Joyce was on any particular day, rather than dwelling on what had been lost. Paring our relationship down to the essential of being together, without expectation or judgement, was surprisingly liberating. There was much joy in simply being together, perhaps holding each others’ hands. When she no longer remembered my name, Joyce would describe me as a “kent face” – a face she felt comfortable with. That was an honour for me. It felt like a blessing. And to be anonymous was quite liberating too: I could be a channel.

Over time there were fewer words, and then almost none at all. But Quakers are at home in silence…and we know something about sharing it, encountering others in its depths and, above all, letting ourselves be used in it (Qf&p 17.06). Yes, it often felt dark, but who knows what work was being done in that apparent darkness? Who knows what work?

Of course, I often left the care home with a heavy heart. How could I not? How could I understand and come to terms with what was happening to a dear Friend? I endeavoured to lay aside my personal sorrow. There was something in those words of Isaac Penington that spoke to me Give over thine own willing…give over thine own desiring to know or be anything and sink down to the seed which God sows in the heart, and let that grow in thee (Qf&p 26.70). And so I found courage and our time together was, once again a sweet experience.

Joyce had sat together with us in worship at the meeting house for so many years, how could that deep friendship, that knowing one another in the things which are eternal (A&Q 18) not continue? I found there was a way in which, although I sat alone with her, and in silence, meeting was there with us, alongside us. That helped open my heart to a loving presence whose power we could share.

Being alongside a Friend in the journey of dementia takes us into unknown territory, into a landscape of the unknown. There is presence, and there is absence. The overlay between the two is complex. I never felt with Joyce, or with other Friends with dementia whom I’ve known, that they were lost, even though it might seem they were at a great distance. The foundation of our friendship was essentially a friendship of the spirit, so naturally that bond can continue, living in one another still (Qf&p 22.95), perhaps even growing, whatever the physical manifestation.

There’s one final thing I’d like to say about that seemingly dark time – reflecting on it now, I know that it was a relationship of equals. It wasn’t about me caring for a Friend who was the victim of illness and diminished by it.

It is a mystery, but a mystery I am nevertheless clear about, our friendship was strengthened as we continued to accompany one another in the spirit.

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